Riley Mackenzie Norton's update blog
It's almost been 12 hours and I wish we had something to report. Honestly, at this point, no news is not feeling like good news. Quite the contrary. Keep sending positive thoughts our way. We need all the encouragement and positive energy the universe can offer us. Thanks.
Posted by Mother in Chief at 10/09/2014 08:59:00 PM
Riley was born with congenital heart defects that were detected shortly after birth. He has a condition called heterotaxy which means his internal organs are reversed. His heart is on the right side of his chest. He is also missing a spleen, a cardiac-related condition called asplenia syndrome. Riley's heart only has a single ventricle and a common valve. Before treatment, oxygen poor blood mixed with oxygenated blood causing severe cyanosis ("blueness").
There is no cure for Riley's disease but a three-stage palliative treatment is commonly performed. A few days after birth in April 2003 surgeons at UCSF performed the first stage, a BT Shunt. In May 2004 surgeons performed the Glenn Procedure. In March 2006 Riley underwent the Fontan Procedure, the third stage. Riley developed protein losing enteropathy and in March 2007 received a Fontan fenestration which failed, followed by the Fontan takedown in April 2007.
In 2014, Riley began developing arteriovenous malformations in his lungs. That's an indication that his Glenn circulation is not holding up. In October 2014, Riley went to Stanford for a 1.5 ventricle septation repair.
8 comments:
Sending love and positivity your way! Hang in there.
All crossables are crossed. Sending good mojo your way.
Riley has many heathens out here praying for him, and you have many mothers wondering if we would have your strength.
Hey Suzanne - sending you all the strength, positivity, and love I have to offer, my dear friend. So much support coming your way....I know this has been an incredibly long day. I'm here for you if you need/want anything!! Love you.
Gwynne
Sending love and light and breath and strength and all positive intentions
Sending a fresh batch of positive energy and prayers. Riley is in the best hands and these hands are taking their time. All for the best long-term results. Love to you all. I can't imagine how difficult all this waiting must be.
Prayers and all the good vibes we can send.
Headed to sleep but wanted to check in before I drifted off. Love you all!
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